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Butterfly Blog

Maintenance and Belief

It has been a while since I wrote my last blog. Being in Maintenance allows us a level of freedom and opportunity that was missing from our family's life for a year. My son is in preschool. He is happy, growing, and thriving. He is, to everyone who meets him, a very typical preschooler. The, "but why?" stage has started, as has the negotiating stage--he negotiates everything. He argues about going to bed, and tries to stall his bedtime. He is gloriously loud and obnoxious in his play, and he's ROUGH--his favorite game is Bash'n'Crash. Once he is dried off from his bath, he sprints down the hall (naked!) as fast as he can and launches himself at me. This game will go on until he crashes into me so hard I fall back and whack my head on the ground--that usually puts a quick stop to the game. Life is so, so, so fabulously normal.

I have written before about that normalcy, and the deep knowledge that it can be snatched away in the few seconds it takes to get the results of a CBC [Complete Blood Count]. And the farther into Maintenance we get, the more I find myself thinking about our present normalcy and the past and the future. It is an odd thing--I know, better than the vast majority of parents, that I need to enjoy the present and not worry about the future and dwell on the past. I know that, and I do enjoy the present.

Yet, I wonder. I have always had a feeling for years and years that my life was too good. My childhood was free of trauma and upset. My parents loved me and my brother and provided us with everything we needed and most of what we wanted. I had all four grandparents until I was almost 30, and I still have two grandparents living. My parents are healthy, as am I and my brother. My husband is a wonderful, loving, loyal, responsible man and incredible father. We are financially stable, and my husband has a stable job. My son was born healthy, and he was always happy, easy, and affectionate.

I have friends who experienced trauma and loss in their lives--the slow, excruciating death of parents by disease, the unexpected loss of a loved one in an accident, the paralysis of a sibling because of an accident, the stunning cancer diagnosis of a spouse or a child, the revelation that their spouse had been cheating and living a double life--so many of my friends and acquaintances have had so many terrible things happen in their lives, and I always felt that I was skating through life. Then, my son was diagnosed with cancer. Suddenly, my family was the cautionary tale, the family that made other people say, "Count your blessings. Look at the Smith family. Their son has cancer." Our life was suddenly tragic in the minds of other people. When my son was first diagnosed, I had a horrible feeling that it was because my life had been too good, too easy. Nobody's life could be that charmed, and my son's cancer was a sort of karmic balance designed to even the scales. When I examine the past, I think back to all I did wrong, all I took for granted. I find myself wondering if my own past sins, if choices I made in my past, somehow led to my son's diagnosis.

An odd thing happens when your child gets cancer--all of the sudden, you find yourself part of a tiny subculture. In that subculture, just as in our larger culture, there are different levels of tragedy. So, to the larger culture, my family is just a step or two away from the most tragic situation imaginable. Yet, in the subculture of the pediatric cancer world, we are the lucky ones. I know that. He has ALL. Even though he's in the VHR [very high risk] category, I'd still take this any day over other cancers--over neuroblastoma, brain cancer, or even AML. I have probably written before about my anger over the use of the word "cure," but the fact is, my son has a higher likelihood of being alive in 5 years than children diagnosed with other cancers.

Even within the (even tinier) subculture of ALL families, we are lucky. Yes, he's VHR. Despite that, despite it taking us double the time to get through Frontline treatment that it should have had he remained Standard Risk, we have, truthfully, had a very easy time with treatment. When people ask me how he's doing, I always start off by saying, "We've been very lucky." He has had horrible nausea, pain, and terribly painful treatments, but he has handled them. He was not in-patient for weeks or months at a time. We have, so far, avoided horrible complications and sicknesses (knock on wood, please). He is a remarkably "normal" child.

This leads to my contemplation of the future: I find myself incredulous that we can be the lucky ones. I find myself unable to believe that the treatment will work, and that we will come through this fairly unscathed. I find myself questioning why we would be the lucky ones. If his cancer was a way of balancing the universe, then how can I expect our family will be spared further tragedy? I have seen families who are some of the kindest, most hopeful, and most loving people I have ever met lose their children to cancer. I have seen families whose belief in God is firm and unwavering, even in the face of staggeringly and, frankly, impossible odds; their children have died. My faith is not that--not by a very long shot.

These people are, quite honestly, better human beings than me. Why are their children taken? Why would ours be spared? I live in a pretty religious area of the country, and I find myself unsure how to respond when people speak to me about God and His plan, or even when they attribute my son's good response to the power of prayer. In our hospital's waiting room, I have seen horrors no parent should witness their child go through. I have seen teenagers who are clearly dying, huddled in a heap under cheap hospital blankets, their skin blending with the colorless grey of the blanket I have seen little children shake and seize as a result of their chemo. I have seen a boy no older than 10 or 11 whose hair had gone completely gray--I am assuming it was from the stress of his life, his existence.

So I question the future--when that sort of suffering is out there, and when children just as innocent and blameless as my son are forced to endure that sort of suffering, what do I believe? Why does this happen? Why should I believe that we are to be spared? And yet, there are no atheists in a foxhole, and so I ask people to keep my son in their prayers, and I earnestly pray for other people's children.

So as you can see, these doubts are difficult to think about, much less write about. My next entry will come quicker than this one did.

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